Charlie Gard: Is It Time To Let Charlie Go? Absolutely Not Says Anne Atkins

July 5, 2017 by PharmaTimes

A parent’s love is a powerful thing. It nurtures, guides, protects, forgives. It is unconditional. And it can sometimes save your life.

Take a young boy by the name of Ashya King.

His parents sparked an international manhunt three years ago when they took their son, then five, from Southampton General Hospital without his doctors’ consent in a final bid to give him the pioneering treatment they hoped would cure his cancer.

Where, I wonder, would he be today were it not for their courage, determination and unwavering love?

For they defied the authorities and smuggled their son out of the country to Prague, prompting an international hue and cry. They were reviled as irrespon-sible and insane. But, as events proved, they were neither.

While in Prague, Ashya successfully underwent proton beam therapy. Three years on and now eight years old, he is well and happy and back at school.

But then, if the tragic story of Charlie Gard has shown us nothing else, it is that there is nothing deeper than the bond between parent and child. And when that child is not only utterly defenceless and terribly sick but also at the centre of a global furore over whether he should be given one last chance at life, those bonds become stronger still.

Their anguished faces may be the embodiment of a living hell, but Chris Gard and Connie Yates are not yet broken people. For while their little Charlie lives, so does the flicker of hope.

Last week the Gard family lost their final appeal at the European Court of Human Rights. Judges failed to come to their aid and give them a chance to take Charlie to the U.S. for the experimental treatment which Great Ormond Street Hospital says won’t help him.

The European Court ruled to uphold Great Ormond Street’s recommendations that Charlie’s life support should be switched off, pronouncing his case ‘inadmissible’ — a dreadful and outrageous pronouncement on anyone’s life.

Yet the groundswell of public opinion for the Gard family grows.

The Vatican said the Pope ‘is following with affection and sadness the case of little Charlie Gard and expresses his closeness to his parents. For this he prays that their wish to accompany and treat their child until the end is not neglected.’ And, as unlikely an alliance as it sounds, U.S. President Donald Trump has joined forces with Pope Francis to voice his support.

But it’s not all prayers, vigils and empty promises. Yesterday, the Pope’s Hospital in Rome offered to take Charlie into its care.

And in another startling development, the American parent of a son with a similar rare genetic disorder to Charlie told how his son’s health improved dramatically after undergoing the pioneering treatment that Charlie’s parents want him to have.

Art Estopinan says his son’s disabilities were so severe that had he been born in the UK, he would not be alive today.

Six years ago the American boy, who could only move his eyes, was given two months to live. Yet now his father says he can move his hands, fingers, feet and arms and is a ‘strong and happy boy’.

Washington sources said yesterday that the American hospital and doctor who treated Art have agreed to waive their fees for Charlie.

So why, in the face of not only international goodwill but real and tangible alternatives, is Charlie still being denied this final shot at life?

Doctors and nurses are wonderful. Modern medicine is almost miraculous in what it can achieve. But it cannot achieve, or know, or do everything. Doctors see the big picture: the case histories, the statistics, the generalised likelihoods. But it’s the parents who know their child better than anyone.

And it’s the parents who, in the case of any severely disabled child, make enormous sacrifices to ensure that their offspring’s needs are met.

And if a child dies for lack of treatment, it is parents, not doctors, who will cry through the night; tears which will go on falling, one way or another, for the rest of their lives.

It has been said that Charlie shouldn’t be put through any more suffering.

Who knows that better than his parents?

Who feels every pain he suffers more acutely than his own mother and father?

Doctors can advise and inform. They can give us their expert opinion to help us make sometimes terrible choices on behalf of our children.

But neither their training nor their knowledge gives them the right to make the final pronouncement on a child’s life.

Have we learnt nothing from Ashya King? Has no humility been learned on the part of doctors; that they might occasionally be wrong?

No recognition from other professionals, too, that just sometimes, dogged and devoted parental persistence might be right?

What is there to lose for little Charlie Gard by entrusting his life to his parents — even if his chances are minuscule?